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Welcome to Our Parkinson's Place

I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's diseases as well and thought it would be nice to have a place where updated news is in one place. That is why I began this blog.

I am not responsible for it's contents, I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish. This is for you to read and to always keep an open mind.

Please discuss this with your doctor, should you have any questions, or concerns. Never do anything without talking to your doctor. I do not make any money from this website. I volunteer my time to help all of us to be informed. Please no advertisers. This is a free site for all.

Saturday, April 1, 2017

Mary Tabler, right, pushes an empty wheelchair. She needed the wheelchair to participate in the walk, but ended up starting the walk on her feet.

Mary Tabler’s friends describe her as an Energizer bunny — she never stops moving.

However, about four years ago, Tabler, 68, noticed something wasn’t quite right. Her handwriting had started to change. She noticed pain in her shoulders and hips.

After having a conversation with a friend whose husband had been experiencing signs of Parkinson’s disease, Tabler realized she exhibited nearly all of the same symptoms. A visit to a neurologist confirmed her fears. Tabler was diagnosed with Parkinson’s two years ago.

“It kind of comes on gradually,” Tabler said. “You don’t realize it until it’s there and you have a bunch of crazy things going on to your body."

Saturday morning, Tabler, along with more than 500 people with Parkinson’s and their caretakers and sponsors, walked around the lake at Cranes Roost Park in Altamonte Springs for the 2017 Walk for Parkinson, an annual event hosted by the Parkinson Association of Central Florida.

To date, Tabler, with a little help from her friends, has raised nearly $3,000 for the association, the largest individual fundraiser this year.

The association as a whole has raised $70,000 on its way to its $100,000 goal, with proceeds benefiting local community programs aiming to help provide the best care for those with Parkinson’s disease. The money raised helps fund resources for people with Parkinson’s including medication, caregiver help, and awareness efforts.

By hosting the walk, the organization helps people with Parkinson’s accomplish one of the most important tasks after a diagnosis—constant movement.

Mary Tabler sits in a wheelchair during a color guard presentation during the opening ceremony. She needed a wheelchair to participate in the walk, but ended up starting the walk on her feet.

Tabler, who uses a wheelchair, insisted on standing up for the National Anthem and walking the beginning of the event.

“You have to keep moving, that’s the idea behind it. If you don’t move, you lose the ability and it’s gone forever,” Tabler said.

The association also hopes to spread awareness of the symptoms of Parkinson’s disease, which include tremors, small handwriting, a soft or low voice, and stooping over. In many cases, people with Parkinson’s also develop dementia. There is no cure, but medication can help relieve symptoms of the disease.

Many people with the disease go years without realizing their symptoms are those of Parkinson’s, according to Emily Rinehart, development coordinator for the Parkinson Association of Central Florida.

Rinehart, 24, first became involved with the association a year ago in memory of her grandfather, who suffered from Parkinson’s for more than 30 years before his death in 2010.

“We’re just trying to celebrate movement as a symbol of hope for progress and finding a cure for Parkinson’s disease,” Rinehart said.

Former Heat center Brian Grant is dedicated to raising awareness of Parkinson’s disease since being diagnosed with the disease in 2005. (AP Photo)

MIAMI – Former Heat center Brian Grant sees the parallels.

In early March 2004 Miami was 11 games under .500, went 17-4 the rest of the way and finished fourth in the East.

In mid-January of this season Miami was 11-30, has won 26 of 24 and gone from the second worst record in the league to the No. 7 seed.

“We had veterans, you kind of expect veterans to bring it together,” Grant said of the team led by the 6-foot-9 Grant, Lamar Odom, Eddie Jones and a rookie named Dwyane Wade.

“This is a young team that really says a lot about (coach Erik Spoelstra.)”

Grant, 45, was diagnosed with early-onset Parkinson’s disease late in 2005. He publicized his disease four years later.

After the diagnosis he decided to recreate the Brian Grant Foundation to support efforts toward the education and awareness of Parkinson’s. The mission is to help those impacted by the disease to live active and fulfilling lives.

The foundation hosts a fundraiser, Shake It Till We Make It, to raise money to provide support and resources for all those affected by Parkinson’s. Shake It Till We Make It is held annually in his hometown of Portland, Ore.Saturday it will be held for the first time in Miami.

Grant praised the Heat organization for being contributors to his foundation and said he has always wanted to do something in South Florida.

“What we’re trying to do is get people who are young and have on-set Parkinson’s, 60 or younger, to continue moving and getting up, not to wait for the cure because that cure may never come in our lifetime,” Grant said. “That’s what we’ve built our program on.”

Grant has become very public about his disease but that always wasn’t the case.

“It took awhile,” he said. “I still deal with it from time to time. I’ve always been someone who is self-conscious about what people think but not as bad as when I was first diagnosed. Then I was always looking to see who was looking and no one was looking.”

When someone is diagnosed with Parkinson’s the best thing is to “progress relatively slow,” Grant said. He has, and he attributes that to being an athlete. His main symptoms are “a tremor, a little bit of foot tapping and a short term memory loss.”

“I really don’t have any limitations other than when I don’t want to do something I say, ‘Oh, man, I got Parkinson’s,’” he said with a smile. “Or I need my kid to get the remote control or something like that.”

Grant played 12 seasons in the NBA, four with Miami before being dealt to the Lakers in July 2004 as part of the trade that brought Shaquille O’Neal to Miami. He averaged 10.5 points and 7.4 rebounds in his career.

Spoelstra will remember Grant as being “one of the ultimate Miami Heat teammates.”

“He’s always remembered here for his time because he was such a giving and selfless teammate, was great for the culture, believed in what you were doing and put his heart and soul and guts out there to try to help you win,” Spoelstra said. “You love guys like that. Obviously what he’s gone through has been so tough. But the awareness he’s been able to generate and to really try to make a difference I think that is awesome.”

Grant returned the praise.

“People tend to think because you have LeBron James, Chris Bosh and Dwyane Wade you don’t really need to coach them,” he said. “You absolutely need to coach them. But I think he’s really shining with this group, and saying ‘I can coach (a) group of superstars but I can also coach this group of young kids and make a good run at this year.’

UPEI students, from left, Alex Dunne, Sydney Gallant, Kate Kinsman, Andrew Chapman and Mary Whitrow, were members of the second-place team at an Alberta case competition. Submitted photo

CHARLOTTETOWN, P.E.I. - A team of students from UPEI came home with second-place honors from a business competition in Alberta.

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The university’s faculty of business sent two teams to the Alberta Not-For-Profit Association Case Competition, hosted by the University of Alberta’s school of business.

The team took second place, finishing behind a team from the University of Regina.

As part of the prizes for the ANPA Case Competition, teams who finish first, second, or third are given the opportunity to donate $5,000, $3,000, or $1,000 respectively to the charity of their choice.

UPEI’s team chose to direct its donation to Parkinson Canada, because a member of Kate Kinsman’s family lives with Parkinson’s disease. Her teammates chose to donate to this charity in advance of the competition, but didn’t tell her until after their win.

The case competition encompasses elements of strategy, marketing, finance and accounting, but it focuses on the unique challenges of the not-for-profit world.

Students must consider and balance the social mission of the organization, as well as its financial goals. Competitors must find creative, resourceful, and practical solutions with the limited resources of a not-for-profit organization.

Team one from UPEI was made up of Alex Dunne, Andrew Chapman, Kate Kinsman and Sydney Gallant. Team two included Carter MacDonald, Shanna Blacquiere, Krista Lee Oliver and Brodie Watts.

The ‘case partner’ for the competition was the YMCA of Northern Alberta. Students toured the YMCA facilities in downtown Edmonton where they were able to interact with employees and get acquainted with the organization before participating in a live case competition, working on a real and current problem of the organization.

Students had 24 hours to analyze and prepare a solution to the case. During that period, they had access to the Internet and textbooks, but were allowed no communication outside of the members of their respective teams.

Teams were given 15 minutes to present their solution, and an additional seven to answer judges’ questions and defend their recommendations.

UPEI’s team one successfully made it to the final round, where they gave their presentation again, this time with 10 minutes for questions and defense.

A wonderful evening of entertainment will take place at Set Theatre next month when the Cairdeas Kilkenny Parkinson's Choir take to the stage.

The members have been enjoying rehearsing for the show and will perform alongside several well known and talented musicians including harpist, Siobhán Armstrong, Síle Daly on the oboe, Alexander Rafter on classical guitar and accompanist, James Rice.

The group is always looking for new members and is open to anyone affected by Parkinsons. Most of the member had no previous choir experience.

“The Cairdeas choir is open to people who either have Parkinson's or have a loved one living with the condition There is a real sense of community and shared experience in the choir,” explained musicial director of the choir, Ann Moylan.

“At the moment we have members ranging from young adults up to people in their eighties. There are no auditions and we cater for all abilities. I believe that everyone has a voice and can sing,” she added.

The group meets every Wednesday at 7pm at the Parish Centre in Loughboy. It is informal and there is a lively buzz among the group as they warm up, rehearse and of equal importance have a chat and a cup of tea.

“We start with some warm up exercises and loosen out our upper body. This takes any tension away and makes our voices work better. It involves vocal warm ups and breathing exercises.

“One thing about Parkinson's is that your voice can diminish so singing and doing these exercises can improve your voice. We all have an inbuilt musical instrument in our body which is our voice. The focus is very much on friendship and fun and there is great camradery in the group,” she said.

A short film will also be shown featuring the choir speaking about the group.

“The group offer great support in a positive and uplifting environment.

“The members of the group are the experts on Parkinson's, not me, they are living with it and then sharing their knowledge with the group.

“It is wonderful to see the process - there is a huge sense of achievement and it is fantastic for people to realise that you can learn something new to a good level at any age,” added Ms Moylan.

The variety concert, will mark the official launch of the choir, and takes place on World Parkinson's Day on April 11. It will feature pieces as diverse as the magnificient Nella Fantasia, a song sung in Italian based on the theme 'Gabriel's Oboe' from the film The Mission to the rock classic, Born to be Wild.

Doors open at 7pm and the concert starts at 7.30pm. Tickets are €10 and are available on the door on the night. Finger food is included.

St. Luke’s therapist assists local Parkinson’s patient using exercise physiology

Allan Kroland strode down the hallway in the new rehabilitation building at St. Luke’s Hospital looking as though he was intent on vaulting into the ring and knocking out his opponent in the first round.

In fact, Kroland noted, “This is going back into the ring. Once my mind is set, nothing will get in my way.”

For Kroland and many others, the main opponent they are facing is Parkinson’s Disease.

But thanks to the efforts of researchers and the Foothills Parkinson’s Support Group, those local patients have a new weapon in a special therapist and a new course of therapy.

Kroland’s therapist, Hanna Nguyen, DPT recently attended a workshop to learn a comprehensive, research-based program that uses exercises to combat the effects of Parkinson’s Disease. And thanks to a donation by the support group to St. Luke’s Hospital Foundation, Nguyen received further training at a Parkinson Wellness Recovery Course in Tucson, Ariz.

Nguyen is now a disciple of Dr. Becky Farley, who developed the Power Course of therapy to help Parkinson’s patients like Kroland vault into the ring.

Farley developed the gold standard program, according to Richard Kennedy, who, along with his wife Dot, heads the Foothills Parkinson’s Support Group, which meets regularly at Landrum Library to learn and share information on improving life with Parkinson’s.

“I recognized the value of it,” Kroland noted of Farley’s and Nguyen’s therapy, “not only for me, but for the community.

In finding the necessary funding to help train Nguyen in the program, Kroland reached out to the community, “and Richard and Dot Kennedy stepped in. I’m thankful for the Foothills Support Group.”

Though Richard and Dot do not have to deal directly with Parkinson’s, the disease has struck members of Dot’s family. As directors of the local support group, and from personal experience, they know what patients require. Fundraisers and donations support the group’s efforts.

Kroland receives therapy from Nguyen four times weekly, for a four-week period, Kennedy noted.

“The great thing about it is the benefit. The only thing we have is exercise. These exercises are the foundation,” Kroland said.

Kroland, who is also a drummer, and someone who incorporated various exercises into his life, had become aware of Becky Farley’s research and decided he would like to have a therapist who practiced that program. Kroland said he approached Scott McDermott, director of physical rehabilitation at St. Luke’s. Then, the Kennedys’ support group was able to provide funding to help Nguyen get training.

The Power Program features four big moves each while the patient is standing, sitting, on all fours and lying down. Nguyen notes that the moves incorporate a flow and a rhythm.

Nguyen said she likes “to hit the ground running.” Her program, based on Farley’s research, devotes three weekly sessions of 45 minutes each for some patients. Frequency of therapy is important, she noted, as patients have a lot to learn to incorporate the movements. Frequency helps them learn more thoroughly.

Understanding that Kroland seemed to light up during his therapy, Nguyen added that when patients exhibit that kind of enthusiasm, “It really lights me up, too.”

Knowing that exercise helps the brain create dopamine, the neurotransmitter, the deteriorating production of which causes Parkinson’s, Nguyen remarked, “Any time the brain can create its own dopamine, it’s important.”

Nguyen has two patients whose protocol includes power moves. She incorporates a lot of the basic moves and patterns with several of her other patients.

The program also works, she noted, with patients who have other disabilities.

“Allan has such incredible drive and motivation,” Nguyen noted of her patient, and said that becoming trained in the Power course was “a game changer” for her.

“I’m thrilled to work with the patients.”

About the Foothills Parkinson’s Support Group

Foothills Parkinson’s Support Group meetings are held the third Wednesday of each month (except in September, when meetings are held the fourth Wednesday) at 1:30.

As a special feature during Parkinson’s Awareness Month, that group will meet at the Landrum Library on April 19, with Nguyen speaking about her program at St. Luke’s, and how Parkinson’s and other patients respond positively to it.

Plans for a May picnic at the park in Landrum will be announced at the April meeting.

For more information on the Foothills Parkinson’s Support Group, call 864-404-8001.

Parkinsons disease is notorious for so-called motor symptoms like muscle rigidity, tremor, slowed movement, and unsteady posture and gait. Less well known — even to some doctors who treat the disease — are the effects of Parkinson’s on thinking. These “cognitive” signs include a general slowness of thought, “tip of the tongue” forgetfulness of words, and difficulty juggling multiple mental tasks.

Parkinson’s disease and the medications used to treat it may also affect how the brain learns. And even stranger, certain Parkinson’s drugs can trigger compulsive behaviors such as pathological gambling or uncontrolled shopping. Understanding these and other aspects of how Parkinson’s disease affects the mind offers hope of a better life for people with a disease estimated to affect more than a half million Americans.

The death of dopamine

Parkinson’s is caused by the death of brain cells that producedopamine, one of the chemicals that carry messages between neurons. Low dopamine impairs the basal ganglia, which are brain regions that control movement and coordination.

Dopamine-boosting drugs address motor symptoms, and this allows people to function better. But realization is growing that some patients need help with non-motor symptoms. These include depression, anxiety, daytime sleepiness, insomnia, lightheadedness, urinary incontinence, nerve pain and loss of smell. Some patients develop memory loss and dementia, generally late in the disease’s progression.

Research priorities

In 2001 and again in 2006, the National Institute of Neurological Disorders and Stroke (NINDS) held meetings at which scientists, doctors, and patients discussed priorities in Parkinson’s disease research. Non-motor symptoms emerged as a major concern.

“In both summits, patient advocates and the clinical community identified it as one of the most important under-addressed areas for patients with Parkinson’s disease,” notes neurologist Debra Babcock, MD. She heads the NINDS program on Cognitive Neuroscience that funds research on non-motor Parkinson’s symptoms. “What’s worse is that some non-motor symptoms are actually aggravated by the treatments used for the motor symptoms.”

What is needed, Babcock says, is more research. “It’s understudied,” she says. “Less than 5 percent of our Parkinson’s disease grants are looking at cognitive dysfunction. This is an improvement over prior years though, and we continue to actively encourage the research community to focus on this issue.”

Impulse-control disorders

The latest non-motor symptoms to come to light are impulse-control disorders. These occur in at least 14 to 17 percent of people who take dopamine agonists, says neurologist Melissa J. Nirenberg, MD, of Weill Cornell Medical College in New York. The most common are compulsions for gambling, sex, shopping, food, eating, or even hobbies. Some people exhibit “punding,” or repetitive, purposeless behaviors such as sorting objects. Frequently the compulsion involves a behavior the person “previously enjoyed in moderation,” Nirenberg notes.

Nirenberg is an expert in impulse-control disorders associated with Parkinson’s medications. One factor that still obscures this problem even from experienced neurologists is the sensitive nature of the behaviors.

Some patients might be willing to bring up the fact that they have been eating uncontrollably. But it’s harder to uncover repeated and financially disastrous trips to the casino, or all-night Internet pornography-viewing sessions and visits to prostitutes.

A frank discussion with a spouse or partner can help. Then the medications can be changed to reduce or eliminate the problem

Please join us for the “15th Annual Parkinson’s Disease Symposium for Patients, Caregivers, and Healthcare Providers” on April 8th, 2017! We will have a variety of topics discussed by experts in their fields and special presentations from the Sing for Life, Dance for Life, and Arts in Medicine groups.

Friday, March 31, 2017

I can't walk and chew gum at the same time. Really. It’s too much multitasking. I freeze up or sometimes even fall down. You see, I have Parkinson's disease (PD).

April is Parkinson's Awareness month. To honor it, you’ll see the Rochester city skyline lit up in blue on April 1, 7 and 8: Xerox Tower, Tower 280, Legacy Tower , CityGate and more.

If you have PD or know someone who does, this is the perfect time to learn what you can do. The National Parkinson Foundation of Greater Rochester (NPFGR) is hosting its annual education symposium on April 8 at the Hyatt Regency Rochester. (Go to npfgreaterrochester.org to register.)

NPFGR can connect you with support groups, wellness programs, education events, answers and opportunities. It can help you live your best life.

What does that mean? As a person with PD, living my best life means trying to rise above the daily frustration and anxiety that comes with this disease and working to alleviate the suffering of others dealing with it. The PD community is encouraging and compassionate: We understand just how tenuous "life as we know it" truly is.

With PD, physical bodies age at an accelerated rate and can result in stooped posture; a slow, shuffling gait; tremor; soft speech; depression and other cognitive impairment.

I have no tremor and do not suffer the debilitating effects of depression, but I do constantly battle “freezing.” Standing at the sink, for example, with wet hands and a towel only steps away, my torso swings round to reach but my feet don’t budge — they are “frozen” to the floor. My upper body’s motion overtakes my lower body while my feet remain stubbornly fixed in place.

I live my life in the face of unwelcome change and fear — fear of the unknown, fear of dependency, fear of falling.

With the support of my tribe, I actually practice falling. Learning how to fall is another step toward living my best life. It’s better than curbing activity, which can lead to a loss of muscle tone and balance — and maybe a more devastating fall.

I choose, each day, to live my best life — to exercise, socialize and benefit from the compassion I share with others.

I encourage those with PD, their care partners, and the larger community to step out in hope instead of fear, to live your best life.

Yvonne Hylton of Irondequoit is a former corporate spokesperson with RG&E. After she was diagnosed with PD in 2007, she became a certified yoga instructor and health coach.

I
just began writing Poetry for my newest blog: "P0ETRY:LIVING LIFE TO THE FULLEST
WITH PARKINSON'S DISEASE." It is mostly upbeat and sometimes funny. I hope you enjoy it.

I am a wife, mother and grandmother. I was diagnosed in 2004 by a Neurologist and a Neurologist- Movement
Specialist. Going back through my medical records, I had tremors since 1987. I
have dystonia of the feet and calves as well. In 2004, I had a major stroke and
was paralyzed on my left side. It took a year of Physical Therapy to regain 99%
back.

I feel strongly about
spreading the word about Parkinson's Disease as we travel throughout parts of
the United States. My husband Larry, married on August 2, 1966 to my best
friend.been married for 50 plus years. In 1967 he joined the Marine Corps as an enlisted Marine , then became a warrant officer 4 Selective and retired as a Capt serving over 22 years. ( A Mustang). I am fortunate to have the support of my family and friends. I also have a maltese named Spencer who is my Service dog.God has
truly blessed me and I am thankful. Parkinson's Awareness is important to
me. I continue to exercise, meditate and thank the Lord for each day. God Bless our military and their families. God Bless the USA. Semper Fi !

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